How social media helps us with Type 1 Diabetes

Helping the newly diagnosed

In one of the very first pages I did for this blog I wrote this about the UK Diabetes Online Community on Twitter (#GBDOC):

“The info you can find is so useful that I think that the first advice from any DSN (diabetes specialist nurse) to any newly diagnosed UK patient – or their parent(s) if it’s a child – should be ‘get yourself on Twitter and search for #gbdoc’. Perhaps they should even take it further and refuse to let you leave hospital until you’ve set up your Twitter account and started to follow a few on the #gbdoc people… okay, maybe not.”

How? What? Where? Why?

I’ve created a leaflet which explains how social media has been useful to us; when we’ve used it and the responses we got back; the types of social media channels available; how to start.

NOTE: You can easily get to this page using the URL: http://bit.ly/circlesofblueleaflet

Click the leaflet on the right to download it, have a read and let me know what you think. If you’re going to print it, print it double sided and fold the leaflet as shown at the bottom of page 1.

If you think it’ll be useful to anyone please send them a link to this page, or share it on their Facebook page using the button below.

Health Care Professionals and Diabetes charities

I understand you might not wish to put this out as official material but if you’d like to do something similar I’m happy to help. Hopefully though you can point people in this page’s direction, using this link: http://bit.ly/circlesofblueleaflet.
Want to hear the view of a Doctor about the potential of Social Media use? Read this by Dr Partha Kar: Social media in diabetes: bane or boon?.

First injection at home, my best friend saved the day

30th December 2010
Good friends of ours were due to visit on 30th December for some festive fun but I thought Amy would want to cancel as it was the day she left hospital with Type 1 Diabetes. Instead she surprised us all, saying she didn’t want something else ruined over Christmas, so they came.

It was all a bit weird, something akin to the fear we had when we brought home newborn Emilia but without the joy. Our friends turned up and the atmosphere was (very unusually) a little strained as no-one really knew what to say. We were all exhausted but we put a brave face on it and tried to pretend everything was normal. The evening was fine until Amy had to do her Levemir. We went upstairs to her bedroom and then followed a couple of hours of hell.

The last injection Amy had done in hospital had not gone so well, it hurt her. Therefore when she came to inject at 8pm she had that memory vivid in her mind. Mixed with the exhaustion and emotion of the last few days I should have realised there might be trouble, but I was totally unprepared for what followed. Amy had seemed so confident in hospital but when she tried to inject at home she freaked out.

It was heartwrenching as a parent to watch your child psyching herself up to do her injection. She had the needle poised over her leg, taking a deep breath then she would burst into sobs saying she couldn’t do it. Each time I suggested that I could do it but since I hadn’t practised (on her) in hospital, Amy was adamant, “No, you might hurt me!” I started off calm, eventually explaining to Amy that she had to do it or we would have to return to hospital and she didn’t want that. Kev came up after about 20 minutes and he tried to reason with her but by this time she was overwrought and emotions were running high. We cuddled as she sobbed, her face all blotchy and red. Once Amy was calm we tried again to no avail. After nearly an hour I started to loose my patience I’m ashamed to say, but I was exhausted and I knew she had to do this injection. I raised my voice and told Amy that she would have to let me do it. More tears.

Thank goodness my best friend, also called Jane, was there. We went downstairs as we were getting nowhere upstairs. That was the best decision of the night. Jane’s daughter had given Amy a small beanie that resembled Bagpuss and Jane distracted Amy suggesting she thought of a name for him. Then Jane laughed, saying “I know Diabetes is a right bugger. So lets call him Little Bugger, but you best call him Little B for short, especially at school.” That was the first time Amy had laughed since being diagnosed. It was like a breath of fresh air. Jane also said to Amy that she should feel angry and sad and that anytime she wanted to scream and swear about diabetes she could phone Jane and swear to her heart’s content.

Jane, being not so emotionally involved, defused the situation and brought laughter at a much needed time for which I will always be eternally grateful. She thought of using bribery saying “You know, you should be using this to your advantage. You could get anything out of your parents if you do this injection.” Amy smiled and said she would love to go to build a bear. Jane then offered to pay for her to get one and arranged for us to meet up the very next day. Thank you Jane.

Amy managed to do her Levemir injection with Jane and me beside her. What a relief.

Little B went to bed with Amy and to school until she sadly lost him on the school playing fields about 6 months ago. She still misses him.

Amy never has had to phone Jane, to swear down the phone, but she knows the offer is always there. Friends are a pillar of strength in times like this when you just can’t think straight anymore.

Coming home from hospital

30th December 2010

Whilst the care we received from the staff in the Northbrook ward of Winchester’s Royal Hampshire County Hospital was nothing short of excellent there’s something about being in hospital that just makes you want to get out, quickly. At the same time you want to stay in for the security it gives you, knowing that if there’s a single small problem you can speak to a nurse and the appropriate care will be given. At home you’ve got similar options as you can phone the ward to get advice but most of us want to stand on our own feet and be able to cope ourselves. Most people hesitate until they need to call, meaning the problem has got (far) worse before you seek advice.

There were many factors that made us want to go home and for the nurses to find it easy to agree:

On top of the list above, good friends of ours were due to come for a Christmas get together and Amy really wanted to see them. We’d spoken about postponing the evening until later but Amy was having none of it, already displaying that she wasn’t going to let diabetes rule her life and stop her from doing anything.

We decided to leave hospital after Amy had had her early evening meal and had successfully done her injection. The nurse was there to watch her do her injection, it felt like a test, which if failed would mean Amy spending another night in hospital. She didn’t want that, we didn’t want that. Up to that point all of Amy’s injections had gone well; it was almost obvious what would happen next.

Amy chose her leg as the site and prepared herself. We watched, her sister watched, the nurse watched, Amy hesitated and hesitated. In my mind I’d decided that we’d be staying another night in hospital. Then Amy did it. I glanced at the nurse who was congratulating Amy. In my mind I decided that we’d be going home tonight. The meal was eaten and we prepared to leave.

Our friends arrived at home moments after us. We shared hugs without smiles and without tears, whilst sharing glances which conveyed words which didn’t need speaking. We were all glad it was them there at that time. Sitting around drinking and chatting and the world seemed a normal place again except for one thing, I wasn’t drinking. Well I couldn’t; what if I needed to drive Amy to hospital quickly?

The time came for Amy to do her first injection at home, it was her night time basal of Levemir. Jane and Amy went upstairs to do it in private at about 8pm. At points I went upstairs to try and assist, one of our friends did the same, but Amy wanted to do this herself. All different methods of assisting were tried but nothing worked and she wouldn’t let anyone else do it either.

Finally they came downstairs at 10pm. The first injection at home had taken two hours.

To read more check out Jane’s article on how the first injection at home went in the next post.

The smallest conversation can mean so much

30th December 2010

In the children’s ward at Winchester hospital there’s a room where parents can go if you need a little time out, without children. Equipped with kettles, fridges and toasters, a sofa and some chairs it offers a place to go and calm, or to scream if that’s what you need.

Jane and I went in there to have a cup of tea – tea of course cures all problems momentarily – and to chat about what had happened during the last 24 hours and specifically because the recent Glucagon training session had scared us somewhat. We’d also been told a little about Diabetic ketoacidosis (DKA) and it was all becoming a little too much.

After a few minutes another couple came in to and heard us talking about diabetes. They asked us about what had happened and how we were.

Then they told us a couple of things which, for me at least, helped an awful lot.

Their daughter had type 1 diabetes and was diagnosed many years before. They praised the staff at Winchester and said how good it was that they could if necessary go direct to the diabetes team for anything that was even remotely connected to diabetes. This meant no worry about getting the GP at the local surgery who knew diabetes inside out, or having to explain our situation again and again. This helped a lot.

Some thoughts crossed my mind: why were they here?; what was wrong with their daughter?; just how often do they find themselves back in hospital with her?

Somehow I managed to get the answer to all these questions without even asking as they sought to calm the worries they could clearly see written all over our faces.

“This is the first time our daughter has been back in hospital since being diagnosed, she’s just having a fever and we’ve found it difficult getting her blood glucose levels down. We called the hospital and they said ‘don’t worry, just bring her in and we’ll check her.’.”.

They probably never knew how much their words reassured us.

 

Does this mean I can’t go to India anymore?

One of the things they did as soon as Amy was diagnosed was to give her a pen and a pad, so that she could write down any question that popped into her head. In the next 24 hours many questions were written down but there was one that surprised me, pleased and relieved a personal doubt I’d given myself.

“Does this mean I can’t go to India anymore?”

We’d been planning a trip to India, our second family trip there and it was going to be a big one: one month away and visiting the roof of the world, the Himalayas and the regions near by. The centre point would be Ladakh and a two day coach trip through the Himalayas from Manali to Leh. I’d been planning this for months, reading for hours a day and I was just about to buy the flight tickets.

As soon as Amy was diagnosed and when I had a few minutes to myself I thought about the trip and one thing made me decide we wouldn’t go, we shouldn’t go, we couldn’t go. The trip to Leh in Ladakh goes over mountain passes as high as 5300m and at such heights Acute Mountain Sickness (AMS) can be a real problem which can prove fatal if not treated quickly.

Dr Google told me one of the preventative treatments is to drink sugary drinks.
Sugary drinks + diabetes + risk of AMS = no way am I doing that.
(It turns out Dr Google was once again wrong but I only found this out many months later.)

When Amy read out the questions she’d written down I couldn’t believe that with everything currently going on she was worried about the trip. It was at that point I made a promise to myself never to let diabetes stop us doing something we wanted to do, to never let the ‘it’s easier not to do it’ attitude take control, as long as we weren’t going to be reckless. With recklessness in mind and because of my limited knowledge of AMS and even more limited knowledge of diabetes we decided to skip Ladakh and go elsewhere.

What resulted was a 2700 mile backpacking trip using overnight and daytime trains, over four weeks, from Amritsar in the north, to Goa. We prepared for the trip with our recently learned diabetes knowledge and with the hospital’s email addresses and phone numbers close at hand. Everything went very well and whilst we had a few diabetes related problems it never stopped us from doing what we all wanted to do.

But we never would have gone if Amy hadn’t had asked that question.


You can find out more about that trip by reading our Monsoon Meandering blog.

 

First questions from a newly diagnosed diabetic

Here is a list of questions I wrote on my pad within the first 24 hours of being diagnosed.

Will I have diabetes forever?
They told me straight away that I would.

Will I need insulin for every meal?
Yes, I would need to take insulin with every meal and also take some other insulin before bedtime.

Does this mean I can’t go to India anymore?
This question is discussed in the article ‘Does this mean I can’t go to India anymore?‘.

Will I spread diabetes by hugging someone?
I love hugging, it makes me feel happy but I didn’t want give my friends and family diabetes. The answer is no of course 🙂

Will I spread diabetes by kissing someone?
Same as above.

Will I always need to do lots of blood sugar tests or is it just because I’ve just been diagnosed?
Yes, it’s best to always test your blood sugars often.

Why do I need to take two different insulins?
One acts quickly and is for the meals you eat and the other one which you take at night lasts longer.

All aboard the diabetes coach

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.

 

 

The ‘What to do if your kid doesn’t wake up’ training session

Oh. My. God.
One day you’re told your child has a serious illness and the next you’re being told what to do if they don’t wake up. It’s been a hard 24 hours.

30th December 2010, just after lunch:

Amy was eager to get home as soon as possible, to get things back to normal. We weren’t so sure. In some ways it was no different to when Emilia was born, we wanted to get out of the hospital as soon as possible; we wanted to stay there for our own security.

One of Winchester’s superb DSNs said to Jane and I that she needed to show us how to do something and that perhaps we should do it away from Amy. It was call a good call, whereas my suggestion of the ‘away from Amy’ place being the vacant bed next to her with the curtain around it, probably wasn’t.

Sat on that bed, with the (not-quite-sound-isolating) curtain around us, the DSN explained about severe hypos and how to use the Glucogel.

And then she did it. She got out the Glucagon kit, Jane’s worst nightmare.

The DSN realised that this wasn’t going to be our favourite subject and dealt with us very well, calmly and professionally but we had no chance of playing truant from this lesson. We understood the need to understand.

We each had a kit, with its bright orange case, its needle and its vial. We followed the instructions and all went well. We felt confident and did it again.

I hope I never do it again.

Diagnosis – the first injection

After being told Amy had type 1 diabetes we were given some time to be together before one of the wonderful DSNs came back to enquire whether Amy was hungry as it was now dinner time. She was hungry, as she had been for the last couple of weeks.

Her dinner order was taken and it surprised me that she was immediately offered what we call ‘weekday food’ or more to the point ‘crappy food’, consisting of things like Smilies, which most 10 year olds like Amy adore. Of course I had the common misinformed opinion that type 1’s couldn’t eat certain foods and I guessed ‘crappy food’ fitted that bill.

We were transferred to the room which was to become Amy and Jane’s room for the night and a second DSN came in, saying that dinner would be ready soon and Amy needed insulin. It was all handled very, very well, with calmness, control and bucket loads of support from the DSNs. I really liked how everyone focused on talking to Amy, not the parents; it made complete sense but I’d rarely witnessed this before.

Then the horrible question came from the DSN: “Amy, who would you like to do your injection?”. I shuffled forward in my chair expecting to do it – remembering Amy’s fear of needles and Jane’s fear of blood – before I was stunned by Amy’s response.

“If I’m going to have to do this for the rest of my life I might as well start now.”

Waves of amazement preceded waves of pride which preceded waves of tears.

It was quite a slow process but she did it. I was so proud.

Diagnosis – a diabetic 10 year old’s viewpoint

Feeling poorly

I had been off school sick in early December, away from my friends who I missed. But it was only a horrible cold and I was sick once or twice. It was nothing to worry about, soon I’d be okay and back at school again.

I’ve always been pretty rubbish at knowing when I needed to go to the toilet but it was getting worse. I was getting really, really, really thirsty and ended up downing pints of water to try and quench my thirst but nothing seemed to work. The more I drank the more I went to the toilet and I remember noticing that there was no colour at all to my wee. But I don’t remember this happening at school at all, which is strange seeing that I was there for two weeks after I was ill and the Doctors say that the early December illness probably caused the problem with my pancreas. Perhaps there’s a delay.

We broke up from school for the Christmas break. I love Christmas because I get to have fun decorating the Christmas tree and seeing all of my family and I’ve got lots of them to see. I love the celebrations, the family ones and the chocolate ones. We’re allowed to stay up later, things are more relaxed, we can snack on chocolates if meals are a little later than normal. When I wanted a drink I’d get it myself, I’d even have my favourite Fanta if there was some in the fridge. It was great.

After Christmas I went shopping with Mummy and before I went out I remember saying “can I take a bottle of water with me” and Mummy said “don’t bother we won’t be that long”. But I did need it, I knew I’d need it and I was right. Why didn’t she listen to me? We’d only been at the shops 5 minutes and I needed the toilet so I went into McDonalds and used theirs. After coming out I complained I was thirsty and asked “can I have a drink”. Mummy said “but then you’ll need the toilet again”. I didn’t get that drink.

We went into Iceland and I saw a pack of fruit juice and pleaded for them. “No”. “No”. “Alright then if you’re really that thirsty”. I opened it immediately after we’d paid for it and drank it. Then I asked for another. I didn’t get it.

At the Doctor’s Surgery

The next morning Mummy woke me up and told me I had to go to the Doctor’s at 10am. At the Doctor’s Mummy explained about the drinking and toilet visits. He pricked my finger and took some blood which he tested but he didn’t really say anything. There was lots of words, I didn’t understand any of them but I didn’t think it was serious as Doctors just give you medicine which you take for a while and then you’re better.

I heard the word ‘diabetes’. I think that’s the first time I heard the word directed at me. I thought about my Grandad who I knew had diabetes and I knew it just meant that he couldn’t quite eat as much cake as he’d like to. I didn’t know there were different types. The Doctor said he’d phone the hospital and they’d call us if needed.

After the Doctors I went to one of my friends to tell her that I might not be able to come to her party and I gave her the present I’d bought her. When I got back Daddy told me that I had to go to the hospital at 3pm.

At the Hospital

It was only the second time I’d been to Winchester hospital. I don’t remember the first time as I was only 1 second old – I was born there.

I wasn’t worried at all. Hospitals didn’t worry me.

Sophie’s Place seemed really friendly and so did the people. They measured my height and weight and sat me down in the childrens’ in-patients area where they took my blood pressure. It still didn’t seem very serious and I felt quite calm.

We went into a room and a nurse came to see us. She said she was very sorry but I had diabetes and I would need to take something called insulin. I didn’t know what it meant but it didn’t seem very serious. She asked if I had any questions.

“Will I have this for the rest of my life?”.

“Yes, I’m afraid you will”.

I started thinking that this might be serious. I felt gutted, worse than gutted, the rest of my life! I remember looking at Daddy who looked really sad.

They told me they needed to take some blood and then left. They seemed to be gone for ages. I started crying with fear of the needle. They put something called a canula in my arm but before that they put on some cooling spray which really hurt. The canula didn’t hurt as much.

My First Injection

It was dinner time. The nurse told me I needed to have some insulin and we all did some practice injections on a stuffed case. Then she asked me who I wanted to do the injection.

“Me”.

I said this because I was scared that if Mummy or Daddy did it and it hurt then I wouldn’t be able to do anything about it. The nurse had said that the pencil case would be tougher to pierce than my skin and I was worried that Mummy or Daddy would do the injection too hard and it would hurt me. If I did it, I’d be in control and I could do it as softly as I could.

It didn’t take me very long to do the injection. I didn’t hesitate even though I didn’t know how much it would hurt me. I just wanted to get it over and done with.

I didn’t have any pyjamas, I wanted my teddies and Mummy didn’t have any food so Emilia and Daddy went home and to the shops.

They gave me my dinner, there were six Smilies and loads of other stuff. At home I only ever get 3 Smilies. I’d always wanted to stay overnight in hospital but not this way, but 6 Smilies! Hospital didn’t seem so bad.

Nanny and Grandad came over to look after Emilia and Daddy returned with some food for Mummy and some new pyjamas for me which Emilia had chosen. Soon it was time for bed and Daddy left. Afterwards I cuddled Mummy and cried, a lot.

Mummy and I settled down to sleep a little before they woke me up, as they said they would, at 2:30am so I could do another blood glucose test. We went back to sleep.

Diagnosis – a Mother’s viewpoint

On the 29th December 2010 Amy’s carefree childhood ended. I had no idea how a couple of days in late December would change our daughter Amy’s life forever and that of our family.

Amy and I were looking forward to a girlie shopping trip to Eastleigh on the 28th December to spend some of her Christmas money while her sister Emilia and her Dad went to watch footy.

But it all went wrong.

I reminded Amy to visit the toilet before we left (as she was quite often caught short) and she had a drink. We set off but within minutes Amy was saying she was thirsty and I remember being annoyed as she had already had a drink, so I dismissed her plea, not knowing this was a classic symptom of type 1 diabetes. As soon as we got there Amy then said she needed the loo, I couldn’t believe it, she’d only just been at home, how could she possibly need to go again? Little did I know this is another sign of diabetes. We dashed into McDonalds and I remember Amy had gone a very grey colour, unlike her.

Now when I look back I feel guilty that I was mean to her when none of it was her fault.

I decided to abandon our shopping as Amy wasn’t in the mood. She was still complaining of thirst and I was astounded when she downed a whole fruit juice in one go as Amy had never really drank vast quantities before. As soon as we got home Amy started drinking pint after pint of squash, interspersed with incessant trips to the loo.

Alarm bells were going off in my head.

I remembered a conversation I’d had with my best friend about her aunt who is diabetic but I pushed that diagnosis to the back of my mind, it wasn’t going to happen to my child. Instead I assumed it was a bad urine infection and knew I would contact the doctor in the morning.

The next morning I woke early and got an appointment for 10 o’clock.

I was still calm at this point. I recall the doctor testing her urine which had ketones in it (not that I knew what they were) then he wanted to do a fingerprick test. He produced a new glucose meter to test Amy’s blood – little did we know this machine would be so vital to Amy’s health for years to come. I was still in denial at this point as the doctor mentioned it could be diabetes and we would have to go to hospital to have another test. Niaively I asked him if we could postpone it so Amy could go to her friend’s party that afternoon. (I cringe when I think about it now.) The doctor promised he would ask the hospital, so Amy and I visited her friend to deliver her present in case she didn’t make the party.

By the time we returned, the doctor had already phoned to say we must go to the hospital at 3p.m. I still didn’t understand the significance of this. I suggested to Amy she wore a party top as although she’d miss the cinema, she might be back in time to go for the meal. How stupid was I?

As we arrived at Winchester hospital I remembered feeling very surreal, was this really happening? We entered the ward through Sophie’s Place, a waiting area for families set up by Sophie’s Appeal. I had had the pleasure of teaching little Sophie who sadly died, aged 6, after a brave fight. Seeing her smiling face on the wall was a lifesaver for me as it helped me put Amy’s condition into perspective. Diabetes was terrible but she was not going to die from it like poor Sophie. This one thought helped me to get through the traumatic hours that lay ahead.

The next few hours were a bit of a blur as the news sank in. The staff were fantastic. I remember going into a sideroom with the diabetic nurse, after Amy had another urine and
finger prick test, to be told she had Type 1 Diabetes. Kev and Emilia broke down into tears but Amy who was sat on my lap, kept asking ”Does that mean it’s forever?” as she couldn’t quite comprehend it all. I was numb but kept thinking she’s not going to die.

The nurses found her some left over Xmas presents to make up for the fact that she had missed her party but that seemed a lifetime ago. The really harrowing ordeal for me was when they put a canula in her hand to take blood. She was probably dehydrated which would have made it more difficult. Amy went berserk, she hated needles, she still does. At this point we were all in tears including the diabetic nurse.

The next hurdle was dinner as Amy had to inject before eating. Somehow this didn’t upset her as much as I thought it would, I guess the canula had been far worse. I remember Amy practising with the DSN on a cushion then I was so proud of her when she injected in her leg for the first time.

Amy devoured her nuggets and Smilies, she was starving! I then realised I was famished too. Kev and Emilia left to get Amy and me some overnight things. We were so totally unprepared, I had no idea we would spend the night in hospital. Luckily Kev also brought back some food for me, which I devoured, I was so hungry.

Amy and I were lucky enough to get a side room which was a godsend. Neither of us got much sleep. When everyone else had gone Amy sobbed ”Is this really for life Mummy?”.What an awful question to answer. Needless to say she cried herself to sleep.

Diagnosis – a Father’s viewpoint

Whenever I think back to Amy’s diagnosis there’s a part of me which harbours a nagging doubt about whether a particular event played any part in the start of the autoimmune destruction of Amy’s pancreas. I know what the doctor’s say, that it just happens and you can’t do anything to stop it, but surely they’re wrong: if a person doesn’t get ill in the first place the autoimmune system won’t attack the pancreas. I guess we’ll never actually know until they pinpoint exactly the cause of type 1 diabetes.

Amy had been ill with the usual cold/man-flu/call-it-what-you-will which afflicts most people as soon as kids go back to school, the days get colder and the heating gets switched on. I had tickets for her and me to go and see her first ever gig, the dance act Pendulum at the BIC in Bournemouth on the 7th December 2010. During the week before with Amy still suffering we debated on whether or not she should go but I put my foot down and insisted it was only a cold. If you’ve never been to a Pendulum gig watch this and you’ll understand just how hot you get – by the end of the evening we were completely soaked (I know, euw!). It was a late night out for Amy so to help her stay awake we bought and consumed lots of her favourite orange fizzy drink. It was full on sugar. She was still quite poorly a few days later.

Back to the diagnosis story.

On the 28th December 2010 Emilia and I went to see Southampton FC demolish Huddersfield 4-1 and returned in bouyant mood to hear about Jane and Amy’s shopping trip and the impending visit to the Doctor. Diabetes was briefly discussed and a quick Google confirmed what I already knew, that if Amy had diabetes it was type 1 and that meant injections for my little girl who has a fear of needles. I was devastated at that possibility.

The next day Jane and Amy went to the doctors – read the Diagnosis post – whilst Emilia and I stayed at home. When Amy went to see her friend about the party Emilia and I stayed at home and that’s when the phone rang.

I took the call which said we needed to go to the hospital that afternoon, at 3pm. Emilia had stuff to do and didn’t want to come to something that was a routine appointment so I (somewhat harshly) told her the reality of what the visit was likely to mean and the daily injections which Amy would have to endure. You don’t get a call back so quickly if everything’s okay.

During lunch I watched Jane, she seemed so calm, I couldn’t understand how. We left for the hospital, totally unprepared for an overnight stay, they could have warned us.

In the consultation room we all sat down as the DSN spoke to us. I could see it in her eyes already, clearly breaking news like this didn’t come any easier through repetition, and I just waited for the words ‘type 1 diabetes’. I looked at Amy and Jane and there wasn’t much of a reaction; Emilia, like myself, looked full of tears, as did the DSN.

The next hour or two was a blur. I’ve no recollection of what happened next.

It was dinner time and Amy needed to inject insulin, or bolus as it’s really called, and she opted to do it herself. I was so proud, she was only 10.

Emilia and I left to go and get some pyjamas for Amy which meant a trip back home. We knew that the local Marks and Spencer’s would be open so we decided to buy Amy some next pyjamas as a treat. After some food and back at the hospital and Amy seemed okay but had clearly shed a few tears. I gave some food to Jane, spent some time cuddling and talking and left my little girl and her Mum to spend the night in hospital.

Diagnosis – 29th December 2010

Amy was diagnosed with type 1 diabetes on the 29th December 2010, aged 10. It was an open and shut case, no possibility of it being anything else.

When I look back now I can see that she displayed many, if not all, of the classic signs of someone with type 1 diabetes. Of course, back then we didn’t what they were or what to look for.


STOP (for a moment): Do you know the classic signs of someone with undiagnosed type 1 diabetes? If not, please take some time to view this excellent video by Diabetes UK and JDRF.


The day before, Amy and Jane had gone shopping but just before going Amy drank a lot of water. In the shopping centre she needed the toilet, then said she was very thirsty, she was trapped in a circle of constant drinking and urinating, a first circle of blue. A classic sign; we didn’t know.

Clearly something wasn’t right.

Jane had previously spoken with one of our good friends who mentioned the possibility of diabetes but it wasn’t until Amy started drinking pints of water that Jane recalled the conversation. The appointment was booked for the 29th at 10am, a few hours before Amy was due to go to her best friend’s birthday party.

Our doctor didn’t need time to ponder the options and after testing for ketones and her blood glucose level he called the hospital quickly, saying that they’d call us if we needed to go in, but he’d see if any visit could be postponed until the 30th so Amy could attend the party. Afterwards, Jane and Amy went to visit the birthday girl just to let her know that she might come, she might not.

A few minutes later that bloody phone rang. My heart sank.

At the Royal Hampshire County Hospital in Winchester hospital we went into Sophie’s Place, an area created by the charity Sophie’s Appeal in memory of little Sophie Barringer who lost her life to Wilm’s Disease in December 2004, aged six. Jane was her teacher.

A nurse did another few tests and discussed some personal history, asked about Amy’s symptoms and checked her blood glucose again. We were led into a consultation room by the DSN (diabetes specialist nurse) who started chatting with us, but at the time I felt like it was small talk, just some calm before the storm.

Then a word we didn’t want to hear was spoken, it started with ‘D’, it ended with tears.

Amy didn’t know what it really meant. Jane didn’t know what it really meant. I glanced at Emilia, we both knew exactly what it meant. I glanced at the DSN, her eyes were watering.